Tom, if you are still around I would like to ask you a question or two. I'm on this board on behalf of my husband, who is really struggling with foot pain and decreased activity after two foot surgeries. He sees himself now having severely reduced activity, no longer being able to walk for more than a few minutes at a time, for the rest of his life. None of his doctors have ever mentioned amputation -- they just talk about repeat surgeries and waiting for some day when the perfect ankle replacement joint will be invented. But I am wondering about it because the time he needs quality of life is NOW, not later, and he would desperately like to be the active person he used to be (he's 44 now). I am curious about two things -- what major risks do you refer to when you say you were lucky enough to avoid them, and what is your sober assessment of the level of activity you have been able to achieve now? I guess anything else you might like to say to me I'd like to hear too. Of course it is not me that has to do the thinking about this, ultimately it's my husband. Thanks so much for any wisdom you can provide.

I too am hopeful you'll give us an update, Tom. I've had 10 ankle surgeries. Most recently I had a STAR ankle replacement. A few years ago I had a fusion and it was fine, until my surrounding joints started to fall apart. My doc told me the STAR would give me back the ROM, thus taking some of the pressure off of my surrounding joints. The STAR was a total failure. I'm in more pain - both my ankle AND the surrounding joints - than I was before the replacement. Unfortunately, my doc doesn't want to admit that and said I need to stop whining. So I went to another doc, who agreed that the replacement failed miserably and I need revision surgery.

I've been semi-incapacitated for my daughter's entire life (she's 10). I used to be a competitive bodybuilder, aggressive skiier, and aerobics instructor. Now I have to ask my mother - age 77 - to slow down when we walk together.

I first started joking about how I should "just have my ankle amputated because at least then I'd be able to be active", not realizing this was an actual possibility. After years of looking into it, and numerous unsuccessful surgeries, I'm really really leaning towards the BTK amputation. Who cares about having 10 toe nails to paint if I can't ski / dance / hike / walk??????

I can't live life this immobile. I will keep trying until something either works or kills me.

The following user gives a hug of support to panhines:
fleafly (04-11-2013)

Hello everyone. I'm much like panhines and Katprof's husband in that the person I once was seems far in my past due to all the orthopedic issues I have had most of my adult life. Never mind my knee problems, hip problems, or arm problems. Even with the 17 surgeries I have had for those problems, they don't stack up to the impact the foot problems have caused. After years of gradually giving up one thing after another, I no longer hike, walk, bike, engage in countless sports, do gardening, mess with projects around the house, and so on. Even as a 60-year-old, I just cannot imagine being like this for the remainder of my life. I'm sedentary, isolated, and not very happy. I want to find a way to recover some of my mobility but not by having surgery after surgery. I have enough of all of the surgeries.

In 2010 I had a midfoot fusion that failed three months after I got out of the boot. The surgery was then repeated in 2011. I'm now 18 months post-op and the midfoot has collapsed again and has caused the chopart joint to collapse along with it. After getting multiple opinions from very reputable surgeons, the general consensus is that my best option is to have my entire foot fused. Assuming I have it done, and that this procedure finally works, the fusion will essentially create a brick at the end of my leg. Is this something that will improve the quality of my life? It will most likely reduce the pain, but will it allow me more function? This is where I could use some insight from people who have either gone through this type of procedure, or who might have insight to this type of situation.

I wonder if this fusion surgery is simply another step towards a BTK amputation. To avoid another failure and all the time lost, would I do better to simply have the amputation? Sure, amputation introduces other complexities to my life, but having a brick for a foot does too. I want to improve my mobility and return to some of the types of activities that I used to do, not be in surgery, recovery or rehab mode over and over again.

Hi I also had the STAR ankle replacement and 4 surgeries that failed and recently had the STAR removed and the InBone II put in my Dr Haddad of Glenview, IL. I am just wondering how you are or what they said the reason was for it to fail. He said I never should have had the STAR as it was not right for my ankle. I am trying to find anyone that has also had this problem to talk to.
Thanks,
Trudy

Quote:

Originally Posted by panhines

I too am hopeful you'll give us an update, Tom. I've had 10 ankle surgeries. Most recently I had a STAR ankle replacement. A few years ago I had a fusion and it was fine, until my surrounding joints started to fall apart. My doc told me the STAR would give me back the ROM, thus taking some of the pressure off of my surrounding joints. The STAR was a total failure. I'm in more pain - both my ankle AND the surrounding joints - than I was before the replacement. Unfortunately, my doc doesn't want to admit that and said I need to stop whining. So I went to another doc, who agreed that the replacement failed miserably and I need revision surgery.

I've been semi-incapacitated for my daughter's entire life (she's 10). I used to be a competitive bodybuilder, aggressive skiier, and aerobics instructor. Now I have to ask my mother - age 77 - to slow down when we walk together.

I first started joking about how I should "just have my ankle amputated because at least then I'd be able to be active", not realizing this was an actual possibility. After years of looking into it, and numerous unsuccessful surgeries, I'm really really leaning towards the BTK amputation. Who cares about having 10 toe nails to paint if I can't ski / dance / hike / walk??????

I can't live life this immobile. I will keep trying until something either works or kills me.

So Trudove, you went to IBJI to see Dr. Haddad. There are 50 or more doctors affiliated with IBJI in the NW Chicago area. I recently saw a different doc - one that specializes in the foot rather than the ankle, which seems to be Haddad's specialty. This doctor recommended the triple arthrodesis and repair of the midfoot fusion (again.) He is somewhat optimistic that he can "fix" my problem so that I have less pain. This doctor also conceded that amputation is an alternative, but I think he would be happier doing the fusion than the guillotine amputation he would do (unless I insisted that he do an Ertl procedure.) As several people in this thread have mentioned, doing a fusion puts extra stress on nearby joints, thereby expediting further surgeries. And, the fusion surgery doesn't really have a high probably of success. That leads me to more surgeries, too, and that's the last thing that I want.

I wonder what your thoughts are about Dr. Haddad, and what lead you to him. I, too, was given his name, but I opted for a doctor that does more surgeries of the feet than Dr. Haddad. There is another IBJI doctor - a third doctor - who does Ertl amputations. I am thinking about seeing him for another opinion. I don't want to bounce from doctor to doctor, but I need an accurate diagnosis, a solid approach for treatment, and confidence and comfort with the doctor who will do the surgery.

__________________Best wishes to all, FleaFly

"The way I see it, if you want the rainbow, you gotta put up with the rain." ~ Dolly Parton

Fleafly,
I was referred to Dr Haddad by Dr Tom Clanton who was my Drs mentor for the STAR ankle replacement. He was also one of the Dr that helped get the approval for it in the US. I was trying to avoid a fusion as I did not want a stiff ankle, that was why I had the replacement done in the first place. My Dr told me that Dr Haddad was known for fixing very complicated ankle issues. I was also given a Dr in NC but IL is closer for me to travel from Omaha, NE. When I consulted with him he was very thorough with x rays pictures and video recording me walking barefoot and in my shoes. I had a CT done also, he doesn't do the surgery until he studies everything and has a very high success rate. He is one if the top 23 ankle surgeons in the US. There are people out there that go to Switzerland from the US to have theirs done by a Dr that does a different one. Dr Haddad does the InBone II ankle and doesn't like the STAR, it has a mobile bearing that moves and with all my surgeries and revision and subtalar fusion it was not aligned right so it was tilted back and I had no plantar flexion and couldn't walk any distance because it was affecting all my other joints. Also with all the surgeries and overcompensating on the other ankle it has flared up and it needs surgery but I told him I need to get thus one taken care if first. I am going tI wear an AZ brace on that ankle to help with having to be non weight bearing again since this last surgery. I guess amputation was never talked about in my case, my Drs just knew I didn't want a fusion. So I am hoping this surgery has a good outcome. I have to travel to see Dr Haddad for my 6,12 and 16 week checkups. I fly in and get a hotel and take taxi from airport to hotel to hospital and Dr. I figure it will be worth it if it works since my life has pretty much been on hold since all the surgeries started two years ago May 24. I have been off work since 8/24/11 and I am on LTD until I can go back to work. Have they ever mentioned ankle replacement to you? I know some younger people on the other group I am on have been given the option of fusion as many Dr won't do the replacement on people under 55, but then they can do the replacement when they get older. I know when I was at rehab out there and went to wound care I would see people with the gray boot and ask if they were Dr Haddads patients and most were but one lady mentioned another Dr she had gone to there for a subtalar fusion. It might be worth consulting with Haddad to get his opinion on your ankle if you would be a candidate for the InBone II or ask the Dr you are seeing if he thinks you would be. I would think he could have him look at some of your x rays or he may want to see you himself. Best of luck to you, I know this is really getting old and sure takes a lot out of a person with each surgery.
Trudove

Last edited by moderator2; 05-02-2013 at 07:27 AM.
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Been a while since I have been on here. in view of some recent posts I thought I would give you guys an update about how things went.

I did decide to opt for the amputation route and after some minor complications regarding the rehab I had the operation November 2011.

After coming round from the anesthetic I felt instant relief, (maybe it was all the painkillers) but I think it was to do with not having that useless foot attached to me any more haha.

After spending a week in Hospital to allow for some recovery and the nerves to get use to nothing being there. I started the rehabilitation process. it took me approx 6 weeks of full time rehab to go from being in a wheelchair to walking unaided with a prosthetic limb.

It has now been a year and I feel I have a new lease of life, I can do everything I could do before: drive, walk for hours on end, rock climb, swim, cycle and am even having ski lessons.

Whilst I can appreciate that having an amputation will not be for everyone and would not like to recommend it as there are certain risks that thankfully I managed to avoid. I can try and answer any questions that people out there in a similar position may have.

Feel free to ask me any questions and I will try to answer them.

All the best

Tom

Tom (et alia),

This is amazing for me to read... I am 42 and never thought (even a yr ago) that I would be considering amputation. I think it's just how we associate it with being a last resort on the field of battle (or something of the sort). I have 1 ankle that through trauma continues to get worse. Bone on bone and 20* valgus. Fusion was recommended, as they think I would fall out of a replacement. I too was very active and never thought I would be limited to limping after my kids. I went from a little bit of tightness and discomfort, to just plain dragging around a very painful ankle today. I am thinking that a fusion is just an interim step to having it amputated now. Fusion would be limiting and a lot of people post that they have been liberated after their amputations. I guess it's not an easy thing to decide. If it were, we wouldn't be out here searching. Thanks all.

I have returned to the board to post some news. If you've read my previous posts, you know that I have been struggling with past failed surgeries and uncertainty about my future. I saw five different very reputable surgeons in the Chicagoland area. Four of them wanted to "fix" me. They agreed that my options were limited, but all thought that a triple arthrodesis might be my best chance at having a foot on which I could walk. Of course, the only walking I would be able to do with a fully fused foot would be on solid flat surfaces. Who among us walks only on solid flat surfaces? When I brought up the idea of amputation with these four doctors, they all frowned and insisted that that was my worse choice, not my best choice. They all viewed the triple arthrodesis as giving me something I don't have, while I viewed it as another way to take capabilities away from me.

The fifth surgeon flat out said that any further surgeries on my foot would be futile. His appraisal was that they would fail and I would not have gained a single benefit from trying. He agreed with what I had been thinking for a good long while, now. That is, that an amputation was likely to be my best alternative. He cautioned me about the finality of amputation, and that my life would forever be changed, if it succeeded, or if complications developed. I told him that my life was forever changed with the failed surgeries, so I was not afraid of amputation. We agreed that I should first have blood flow tests of my legs to, at least, have an idea of what the situation was, and if and where there might be blockages. The tests showed that my legs had no blockages.

So, I went ahead with the amputation. It was done on Sept. 3rd. I am now awaiting the day that I will get my temporary prosthesis to begin my gait training and physical therapy. I am doing very well, largely because I went through 3 months of PT prior to the surgery. That effort has paid off already, many times over. I recommend finding a good therapist, with experience with people who have difficulty walking. Have them come up with a series of exercises you can do to strengthen your leg without stressing your foot and ankle. It's possible, because I did it. And thank goodness I did. It has made my life easier, and has put me in a good position to continue to do well.

For those who are considering amputation, you of course have to weigh all your options. But knowing whatever all you know, in the end, it's a gut decision. I decided to go ahead with it with some aprehension. As it turns out, my surgeon said that the tests were wrong. I do have poor circulation in that leg, and any further surgeries would definitely have failed. Knowing that, I feel even more at peace with my decision.

I of course have a ways to go before I am operating at full capacity, but I look forward to being able to do activities I had to abandon in recent years. Walking my dog, gardening, photography, and some sports such as bowling, golf, and I don't know what yet are all in the realm of possibilities. I can hardly wait!

__________________Best wishes to all, FleaFly

"The way I see it, if you want the rainbow, you gotta put up with the rain." ~ Dolly Parton

Tom, was your prosthetic expensive? And did u get the sock with the peg then u put on the prosthetic or something different? I'm thinking of having a BKA soon but I'm scared. (Sorry if I sound stupid but I've never had to face this before :-(

Hi. I am 43 years old and had an ankle replacement with the star inplant. I was so hoping to start living my life with out pain. Th arthritic pain is gone, however I have pain that limits my walking that the dr had no idea what or where it is coming from. He sent me for a second opinion and that dr thought that the star inplant might be a little too big for my foot. I am now in a cast and have been for a month to just rest the foot. I have hardly any pain at all with weight bearing. It comes off tomorrow. I want to go see one more dr. Dr Haddad. I am facing a fusion now. I don't want to be so limited but would do it if I thought I could be free of pain. However, I know that fusions are not without problems. I would rather have an amputation. Anyone I tell that to does not understand how limited I feel right now. I believe that with an amputation and much therapy I could finally be off pain killers, able to go to the zoo with my children, able to walk my dog , able to live my life. I am so scared. I don't have the support for the amputation at this time. Not from family or my dr. I am thankful for being able to read about other people and their success stories. Do you feel it has. Made a huge difference in your quality of life?

Hi I also had the STAR ankle replacement and 4 surgeries that failed and recently had the STAR removed and the InBone II put in my Dr Haddad of Glenview, IL. I am just wondering how you are or what they said the reason was for it to fail. He said I never should have had the STAR as it was not right for my ankle. I am trying to find anyone that has also had this problem to talk to.
Thanks,
Trudy

I had the star ankle put in by dr defrino in July. I recently had another opinion because I am still having problems and I was told that it might be too big for my foot. I really would like to see dr Haddad. Did you like him and are considering and are you considering an amputation?

Thank you tom this did help. I went to the specialist recently and he told me I have two choices. 1. Below knee amputation or 2. Ankle/foot fusion. He was very much leaning toward the fusion. He said the tibia and fibula bones are very slim due to lack of oxygen to my leg. However he thinks a fusion may work. Only problem is that I can not feel my foot or leg so if I get the fusion it will be difficult for me to know if something goes wrong. I was all for the BKA but my boyfriend (common law) doesn't want me to have the amputation, he wants me to get the fusion. I just don't want to go thru the operation of a fusion just for it not to work because my leg and foot are compromised. Then have to do amputation anyway. However doc says that I should do everything I can to save my leg/foot becuz it's very traumatic to have an amputation. So I guess I have to go the route of a fusion, even though I don't want to. :-( but thank u Tom for responding to my post. I hope all goes well for u in the future. :-)

My name is Alexandria and I was also in a motorcycle accident which is leading me to either get a ankle fusion or a amputation. I honestly have no idea what to think or do and I was hoping that you could help me.
I'm just curious what finally pushed you to getting it amputated? Also if you have any advice, because honestly with the amount of pain I'm in I'm not living anymore and want to change that.
Thank you for listening and I hope to hear from you soon.